Monday, June 24, 2013

Something to look forward to.

You wanna know how we cope with stress? Projects. Some small, some much bigger. Keeping busy- there is never a lack of things to do around here.

We found, especially within the last 2 years, Wyatt needs to have something to look forward to each day. We all do, but especially him. Whether it's a friend visiting, the girls coming home from school each afternoon, a new piece of furniture or rearranging "his" room (the living room), a day trip or a really BIG trip, a movie, a sip of a drink or a lick of a lollipop, a day with no one visiting after a busy week or Bryan coming home early from work.

Wyatt spends his days in our living room, his bedroom is our living space. He's taken over. A couple months ago we carried him and all his stuff up the stairs to his real bedroom to have a "sleepover" with the girls for a night. That was HARD and I'm certain Bryan didn't remember the steps being that long before! But Wyatt did enjoy spending time in his room again- he forgot all about the glowing stars on his walls and ceiling, the pictures on the walls, his pinewood derby trophies or the posters of get well wishes from his class mates. He loved it and it was really nice to see him in his own space again.

It's been tough to figure out how to give Wyatt a change of scenery this past year. But after cleaning out our two story shed several weeks ago, which is more like a small unfinished house, we had a thought as I helped him drive his wheelchair up the ramp and he sat inside, resting, while we organized. The more we talked the idea through, the more we talked ourselves into it. With a little drywall, flooring and a lot of clorox wipes the first level of our shed has the potential to be a good space. The electricity is already there, with windows that look out to our backyard or the large farm fields behind our property and two large double doors that open to allow him to interact with or watch the girls play in the may help in getting him out of the living room and house a bit more.

We're calling it his "superhero clubhouse" for our own superhero of a boy.

We decided moving forward with this project quickly was a good idea given his decline. We rallied the troops- thankfully some of the grandparents are generously pitching in to help us. And the girls have been eager to help where they can too. Super Wy is looking forward to his clubhouse and has been asking if it's done...before they had even started. 

Something to look forward to...I sometimes think he lives for these things.

His birthday is coming up and is what initially spurred the thoughts of what we could do for him that he'd enjoy and benefit from. He finds it difficult to play with toys, he very rarely plays video games anymore and has a large collection of movies- which makes traditional birthday present ideas sparse. So, this project will be one b-i-g birthday present...because every boy deserves a clubhouse and every superhero needs a headquarters. Right? 

After the tough week he/we have had, the hammers were heard pounding in our backyard this weekend. Bryan and I are exhausted and feeling rather spent in every way. But Bryan has been outside working so hard to get this room done for Wyatt as soon as possible...he feels it's at least something he can do right now.

Where there's a will, there's a way. I hope.

Thank you for the continued thoughts, prayers and love that has been extended to our family. Wyatt had an ok night. His heart rates are low, but he's sleeping soundly. His o2 sats stayed in a more acceptable range last night, which allowed us all to breath easier for a bit. We met with the hospice attending on Friday and increased his Methadone to help with pain. We're doing what we can to support him and keep him comfortable.
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1 comment:

  1. Bless your hearts. Wyatt is still with you all for a good reason. I cannot express how often I think of him and wonder how the night went. I bet he is so excited to see the finished room! It's nice that everyone is working together so that he does. What a wonderful birthday present. :)